Sat, 01 Dec 2018 09:37:04 -0500WeeblyFri, 16 Nov 2018 05:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/vulnerability-with-chronic-illnessI have learned that vulnerability scares me and chronic illness has added to the fears. Throughout my life, I have built walls and reinforced them more and more as the years have passed by. I avoid letting others get too close in an attempt to protect myself physically, emotionally, and mentally. I do not like to let other people know the most protected aspects of my inner self and personality. Being vulnerable, in my experience, often provides others with too much power that in turn ends up harming me in some form or fashion.

Vulnerability as a patient, literally scares the hell out of me, especially with doctors that have not earned any of my trust. Vulnerability requires transparency, reaching out from my comfort zone, and taking risks that I will be dismissed, doubted, questioned, or mocked from the very doctors (or nurses) that I am trying to receive help from. Past medical experiences that I've endured have led me to retreat further and further, and created new apprehensions, memories, and fears.

I've been dismissed, ignored, laughed at, told it's all in my head, etc various times since being a teenager. Those same doctors, the ones that were supposed to be treating me and helping me get better, instead told me that there was nothing else they could do to help me. I believed them, because what they said was supposed to be right. They had the medical degree, not me, so I tried to convince myself to work through the symptoms, stop complaining, and to stop being a wimp.

And you know what? After months of dealing with the same issues with no improvement and often worsening symptoms, I finally ended up seeing different doctors which eventually led to answers and relief. In some cases, I had to deal with the ignorance in emergency and/or hospital rooms until a new doctor was assigned to me or my vitals went haywire. Each of these times, I had known that my body was not right - but was simply not listened to or not believed - and taught to doubt myself and my reasoning when I had been right all along.

I get it, we can't expect to be "cured" or "healed" when we don't know what the issue is, but making patients feel like they are making it up or not experiencing what they most definitely feel within their body, is more damaging and sometimes downright dangerous. In some cases even life threatening. If a doctor doesn't "see" the problem, if the test(s) aren't discovering the definite problem, the least one can do is reinforce with the patient that you believe them and are going to continue trying to help them find a solution that will help them feel better. It may take a while, it may take patience, it may take monitoring or trial and error symptom management, and that's okay.

Unfortunately, doctors like this are extremely hard to find and quite honestly can be like finding a needle in the haystack. Doctor's suggest a possible issue, may (or may not) conduct a test or two to rule out a possible diagnosis, may try a medication, but then if you don't improve, it comes back as being the patient's fault. The patient is blamed for how they are feeling or blamed for not getting better yet. Many doctors can't seem to accept that they may be full of knowledge, but they still don't know everything. Many (thankfully not all) doctors carry too much pride or arrogance to admit that they don't have the answer or the cure. As a patient, most of us gain respect from a doctor that admits this and follows by saying that they will not give up on helping us find improvements. Don't tell patients that they are not feeling what they feel, or that it isn't real, and then send them away or drop them as patients. This doesn't help! Patients remember and internalize the way they are treated and begin to resist and doubt the intentions of doctors in the future. They begin to lose hope, withdraw, and at times give up on not only the medical field, but on themselves. When we begin to feel as if no one or nothing can help us, that we are at fault for being sick and feeling as awful as we do, we lose our perspective. Many of us carry around the weight of being (or feeling like) a burden to our families, lose the careers that we worked so hard for and even loved, watch our family worry too much, or begin to feel worthless. Who wants to live like that? We are all different, how we think and process things may be different as well, but at some point the resiliency and desire to keep trying so hard diminishes.

We are expected to trust our doctors, sometimes more than we trust ourselves. We are expected to expose our vulnerability. But how?

According to urbandictionary.com, the definition of Vulnerable is"Someone who is completely and rawly open, unguarded with their heart, mind, and soul. Being vulnerable happens when you trust completely. Rather its vulnerability by pain or joy, it's being exposed with all of the emotions that make it easy for someone (someone you trust) to really do some emotional damage or healing.. Vulnerability is the surrender of all control and personal power in regards to letting someone close enough to destroy you!"

Vulnerability as a patient is most definitely daunting. and intimidating. Placing your self care in someone that you are expected to trust, when so many other medical encounters have proven otherwise, is a difficult challege.

The frustration of doctors minimizing pain and sickness, condemning you for not "getting better" or allowing your disease to interfere with your life, condemning or blaming secondary gain if you try to hang on to blessings or portray optimism - is a no win situation. Some doctors are able to "see" and "understand" their patients, are beneficial, and truly make a difference in healing or improving their patients' health, and in return life . Unfortunately, some doctors create more harm than good.

When you are already struggling and falling apart, a doctor has the power to throw the life line to help you or the anchor to make you drown faster. Sometimes the tide that moves us, is set in motion by the personality of doctor that treats us. Literally, our lives can depend on the luck of the draw or flip of the coin.

For example, right before my freshman year of high school, I threw up every single morning, never failed. If I had eaten nothing, I would vomit stomach acid. I LOVED school. I was not in a specific clique. I was not bullied. I had all kinds of friends, was a scholar athlete, etc. But first thing every morning I was sick that year. Most mornings I wobbled away from having a bowel movement in a light headed daze, collapsing on my bed, as cold sweats, nausea, and a spinning room overcame my senses. I felt like I was going to literally pass out, and sometimes actually did. (Possibly unrelated or due to the daily pepto-bismol.) Later in the morning, I would finish preparing myself for school, and head out to begin my day. I didn't have an appetite at school, but made myself eat a little something followed with a little coke to help "settle" my stomach. Around mid-day things began to improve for the rest of the day and evening. My weight remained balanced because I was able to get calories in during the remainder of the day. I was able to function and attend school, not allowing myself to stay home unless I had a fever. We spent months trying to seek help from doctors. I was told that I was making it up, that I was lying, etc. Labs looked okay. It had to be in my head, they said. I was a virgin and was even accused by my family doctor at the time, for lying about that. This led to my first experience with having a female pelvic exam to "prove" the truth. I was 14 years old. Instead of helping me, the doctor traumatized and harmed me, just to admit that I had been telling the truth all along. I never had any sort of intercourse, so now that had "proof" that it couldn't be related to that. But then, that was no surprise, I already knew that! I was just not heard or believed by my doctor. Seriously, how unnecessary and unnerving is that experience to a young teenager? I left once again with no answers, my personal privacy invaded, lack of sexual intercourse proven, and a newfound fear of doctors. I was hurt from the distrust and exam, while also embarrassed and confused about why this was happening. I was terrified to return to this doctor, dreaded and tried to avoid any other doctors. I did everything I could to avoid vocalizing my continued symptoms. I pretended to be alright and ignored the troublesome morning "routine". In Feb of my Freshman year of high school, after months of vomiting and burning abdominal pain, my dad took me to a nearby children's hospital. There we immediately discovered that I had a few stomach ulcers, which were healed relatively easy with zantac. My symptoms resolved. If we had not left and decided to finally seek help from a university children's hospital, who knows how long I would have SUFFERED without help.

Another prime example?I spent months dealing with severe off and on lower back abdominal pain and nausea as a young 32-33 year old adult. I had extreme pain spells that would take my breath away and bring me down to my knees. My primary continued to tell me that if I lost weight it would help. According to him, my pain was a result of my eating habits and lack of exercise. I was told to take tylenol. There was nothing else he could do. Labs were fine. Could be a pulled muscle. Probably just stress. Etc.... (Chronic Patients know the routine.) I was made to feel like a fool. But once again, doctors are "supposed" to know best. So I continued teaching through the sporadic pain spells. Tried to ignore them. My young kids (a first and third grader at the time) massaged and walked on my back to help relax the muscles. Labor Day weekend, my symptoms became too extreme to stand or sit. I couldn't stop throwing up and heaving. I could no longer ignore my body's messages. I could no longer convince myself that the doctor was right and that nothing, besides my weight, was wrong with me. Hours later, I gave up and drove myself in the middle of the night to the local ER. (I have no idea how I made it there in the condition I had allowed myself to get in.) Treatment in the local ER was inadequate as well. My pain level was off the charts. I couldn't stop vomiting. I couldn't find a comfortable position. The pain was making me extremely restless, dizzy, and weak. They discovered that I had a 9 mm kidney stone. We were told that I would be sent home with medicine and would just have to wait it out. While there my body was literally shivering out of control. My teeth chattering so hard that I was unable to get them to stop or even slow down. I was FREEZING internally. But I had no fever, so the nurse berated me, telling me that it was "JUST a kidney stone - stop being a baby." My husband left to go pick up the medication while they went through the discharge procedures. My mom was concerned and kept telling them that they could not send me home like this. Apparently, my coloring did not look good to her. Something was definitely not right. They ignored her. I was in too much pain to talk. They took my vitals one more time before discharge to find that my blood pressure had dropped to 60/30. I went from being rushed to discharge to raced upstairs to the ICU, had emergency surgery, and upon being placed in a recovery room. My blood pressure crashed again after surgery, so I was rushed back to the ICU. A day or two later, after I stabalized, I spent nearly a week hospitalized in a regular room. My mom told me that it was like I was in a coma (though wasn't). I didn't talk, move, or open my eyes for days. The "just a kidney stone" that I was such a "baby" about was actually impacted and had caused a major kidney and bladder infection. My body was going into septic shock and my family was told that my kidneys had been in the process of shutting down. My doctor told my family that I would likely have died if I had been discharged from the ER. I was lucky.

I have other stories, thankfully not as life-threatening, but still moral breaking and validating the fact of medical professionals doubting and dismissing my health concerns, only to later find out that I did indeed have something going on that could be corrected, contrary to their belief that "everything was fine."

More examples of recent negative medical experiences, related to my chronic illness, can be read on the blogs I've linked below. (Note that there are other ones that I have chosen to not write about or share as well.) From gallbladder stones, to severe constipation and impactions as a result of colonic inertia, pain and problems from pelvic floor dyssynergia, esophageal spasms from hypertensive lower sphincter, and central line infections (including bacteremia for at least 2 weeks while searching for answers and help while extremely sick), my experiences have varied. Doctors have proven to me that vulnerability is a risk that I may NEED to take, but still fear greatly, because of so many previous medical experiences.

For the past year, I have become more "accustomed" with how to manage and tolerate my symptoms the best way possible. Trying my hardest not to burden my family along the way. While my family can usually tell when my bad days are becoming too much, they never truly know the complete degree of how bad it gets. I try to protect them as much as possible and don't want unnecessary attention. I have had and still have some wonderful doctors. How much I trust them or let them know depends, as I find it pointless to keep repeating the same issues over and over when I know that there is no simple fix. However, I do reach out to them sometimes, often still with hesitation and apprehension, when symptoms increase drastically with no known reason or become much different from my "current normal."

So as one can see, vulnerability as a chronic illness patient can be very challenging and frightening. Our lives are put in the hands of others, we have to be transparent in order to have a chance of some relief and healing, while knowing in the back of our mind that we are placing ourselves at risk for additional harm as well as lack of understanding or relief. This is just a portion of the reason that vulnerability fears invade me in regards to healthcare.]]>Wed, 03 Oct 2018 18:25:27 GMThttp://gastroparesiscrusader.weebly.com/blog/i-cant-get-away-so-please-stop-judgingI recently discovered a new artist, Stine Bramsen. When listening to her music, two of her songs, which I have included below, really caught my attention. I know in reality that the her lyrics and messages are suppose to be different from my interpretations. I am aware that she is singing about relationships and the challenges that can occur. However, the way I personally relate to these songs, are not in regards to a romantic relationship with another person. Instead, they make me think about the relationship I have with my own body and chronic illness.

You see, to me, her song "Not Giving Up" is an encouraging voice to my own personal health challenges. It represents the way I feel. It reminds me of how a conversation between my inner spirit and illness may go. No matter how hard I try, I can't get away from my body. My body, sometimes physically from chronic illness symptoms, sometimes mentally from being exhausted of coping and dealing with chronic illness on a daily basic, creates pain that I want to escape, but can't. My body, physically and at times mentally, can be, and often is, my body's worst enemy.

My body is ALWAYS trying to fool me. It tells me that it's hungry, needs nutrition, needs hydration, but when I attempt to provide it with what it needs, my body betrays me. Instead of just using the nutrition to help me, it creates crippling abdominal pain, bloating, nausea, and at times heaving or vomiting. My mind also fools me, persuading myself that this bite or swallow will have a different, more tolerable result, until I actually follow through. Then BAM! Consequences arise. Not to mention how little I can actually handle physically, before relentless exhaustion overcomes me. How the hell do you trust a body that is constantly deceiving you?

But, I have to stay. I can't trade my body in for a new one. The scars of my chronic illness are all over me, internally and externally. Scars from numerous surgeries and procedures. Scars from painful and negative medical experiences, hurtful judgmental comments, medical appointments gone bad, medication related side effects. Scars from missed opportunities with my kids whom I love immensely, and the loss of identity from leaving a career that meant so much to me. Scars that remind me of the path my body and health have led me down, scars that have an impact on how I view myself.

I can't deny - there are times, low challenging and terrifying times, when I want to be completely be done with my body. Times that I have contemplated how I can end the pain because it just won't stop! Nobody cuts or harms me the way that my health has. Illness just won't give up on destroying how I feel.

At the same time, part of me is resilient and won't give up either. My soul is not giving up, it fights to put illness in it's place. I strive for better physical health, while also respecting my need to feel ALIVE, to feel like I am living and not just existing. My heart and voice are pushing me, not letting me give up on myself. Because of my family (especially my kids) and God, I keep living. I'm trying to let go of the grip pain has on me, let go of the bad memories, let go of the guilt that illness has made me feel, let go of the power that disappointments from being sick has made me feel, let go of the negative impacts being ill has had on my life and the way I view myself. I'm attempting to learn how to let go of the things that I can not change or control, while not giving up on ME.

I am appreciative of others that have not given up on me, and that have in return helped me to not give up on myself either, even if my illness itself will not give up and disappear. I thank my loved ones and the caring doctors that have been an essential part of my journey.

Unfortunately, not everyone has been encouraging, understanding, or supportive. There are people, some that know nothing about me, and some that were responsible for helping me, that bring me down with their irresponsible judgements. Admittedly, I too, have passed harsh judgement on myself. Most of the time I can forget and forgive those that pass judgement because I know that they don't know what life behind my front door looks like; but the hurt of being judged still appears and is still unnecessary. Even more so, the heartache of people in the chronic illness community, being denied help or dismissed from medical doctors or nurses that lack compassion or willingness to truly listen is inexcusable; Which brings me to the other song I found today by Stine Bramsen, "Don't Judge Me."

Cruelty and judgments, even when deceivingly done behind my back, hit hard. Not only does it devalue or minimize the impact of my illness, but it also sends me down a misguided path of shock and despair. Just because one does not have the capability of feeling my pain, feeling my nausea, living the negative consequences of my illness, or witnessing the decisions and choices that I make (disregarding the costs that I will have to accept later in exchange), does not give them the right to judge. Trust me, I would have no reason to pretend or exaggerate. There are no gains that would make it worthwhile. Why would I choose a life of torture? I can't undo the painful truth of how horrible my body feels, I can't undo the honest truth about how much pain food causes, I can't undo how much fatigue I experience, I can't undo the amount of nausea and lack of sleep that I endure. I can't undo the reality of my health. I can't undo the harm that some judgments have on my spirit.

As Stine's beautiful and powerful lyrics say,"I can't undo the painful truth, I can't undo, God knows I wish I could.Don't judge me, cause I can't have, I can't have your blame on me,cause you were not there, you were not there;so don't judge me, I can't take it anymore."

Sometimes, I "need to hide my pain away" to try to reclaim and live life. It doesn't mean that I am not hurting. Sometimes, when smiles and laughs are seen by you, inside I feel like I'm crumbling apart or that my insides are about to explode at any moment from pain, or feel like I will soon begin heaving by the aromas around me or intense nausea, but I choose to hide it in order to help those I love enjoy moments with me. I sometimes hide my miserable symptoms to strive for something meaningful and cherished in my life. I choose to hide my symptoms, to protect others from worrying about me, or in attempt to protect my own mentality and spirit, if only for a few moments. So unless you live with this illness, you will never know how life-changing and terrible this illness can be on one's life.

"You'll never know how I hurt inside. You'll never know how I've cried and cried and cried."Unless you live with the daily pain and consequences of chronic illness, don't judge me or others."I don't deserve you hate on me." Neither do they.

Trust me, those closest to me, know that "I am hard enough on me" already. I already downplay and minimize the symptoms I experience more than I should. I judge myself harshly by what I can't accomplish but desire so much to do. I judge myself for what I miss out of in life (especially when it comes to my kids), for what I have had to give up (like my career). I judge myself critically for why I am not better yet. I judge myself unkindly for judging myself on things that are outside of my realm, outside of my control. So please don't judge me, I can't take your judgement or blame anymore.

]]>Wed, 26 Sep 2018 13:47:03 GMThttp://gastroparesiscrusader.weebly.com/blog/intentionsI do NOT write for sympathy. I do NOT seek sympathy from anyone.

I do NOT write for attention. I do NOT seek attention from anyone.

I simply write to record and process my personal experiencesand post in the off chance that they may help someone else.

I simply strive to discover a better quality of life;to figure out a way to help my body feel better while living with illness.

If you do not understand and accept that,then step out of my way, taking your false accusations and judgements.]]>Fri, 31 Aug 2018 04:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/frozen-inferno​The morning was fairly normal, when compared to my normal at least.My fatigue and nausea, more pronounced,but in my experience they are always a beast.

I rode with my son on an errandlooking for where at his school he's to park.Not knowing what lay just aheadwas my body preparing to spark.

Unable to sit still or even to walkI was in such tormentuous misery.An infection was clearly simmering,uncontrolled wildfire burning within me.

I tried denial and avoidanceFor at home is where I wanted to stay.I didn't want another line infectionMy mind unsuccessfully tried to will it away.

But, my family saw through my anguishurged me to get promptly checked out.Sluggishly I made my wayfor another hospitalization, no doubt.]]>Wed, 08 Aug 2018 04:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/health-related-books-ive-found-helpfulReal Life Diaries: Living with Gastroparesis by Lynda Cheldelin Fell and Melissa Adams Vanhouten, includes personal heartfelt and thoughtful responses to inquisitive questions that other gastroparesis patients, as well as patients with chronic GI illnesses, family members, friends, or even medical professionals may have regarding life with Gastroparesisis and/or other chronic digestive disorders.

The narratives provide readers with an inside view of the impact that chronic illness can have on one's physical, mental, and emotional health as well as their day to day lifestyle and the connections with those around them. Each of the stories are different, unique, and individualized while also sharing insight that others can appreciate and relate to. This book is not intended to diagnose or treat conditions, but rather an opportunity to learn more about some of the various symptoms, treatments, and knowledge that we've learned from our health experiences. The intention of the book is to make others more aware of their condition(s), recognition that they are NOT alone, and share ideas about treatments or procedures that one may choose to discuss with their personal medical team.

If you are expecting to read a cure all, happy feel good, happy ending book - this is not the book for you. Instead, this is a realistic look into what patients feel, see, think, hear, fear, and even hope while learning how to live and cope with being chronically ill. Not only will you discover the impact that being sick may have on the patients' personal lives, but in some cases, how it impacts their social and family circle as well.

In addition to this book, I have also found the following books to be enlightening, educational, thought-provoking, encouraging, and/or helpful along my health journey. I will add to this list as I read and discover new books that I find to be beneficial.(Clicking on the title will take you to the book's amazon page.)

A Blessing In Disguise by Kristen Fox and Mel KenastonBlessings in Hidden Places by Kristen Fox and Mel Kenaston Both autobiographical books are from Kristen's personal perspective and experiences. Sadly, she has passed away since publishing her books. Kristen was also an online advocate, writing numerous articles for various sites, one of which was MTV.

After the Diagnosis: from Crisis by JoAnn LeMaistreWritten by a clinical psychologists, the reader is introduced to the six stages of emotional response to chronic illness that they, as a patient, may experience. The reader is walked through the stages of crisis, isolation, anger, reconstruction, intermittent depression, and finally renewal.​Gastroparesis: A Roadmap for Your Journey by Chelsey M McIntyreAs a pharmacist and person living with gastroparesis, Chelsey McIntyre shares what she has learned and experienced along her health journey. "Topics covered include foundational material on evaluating information, understanding what is happening to the body, and navigating medications, nutritional supplementation, and alternative therapies."

Gastroparesis: My Personal Journey by Patricia L RosatiAutobiographical book about Patricia Rosati's personal experiences with gastroparesis. As a nurse living with gastroparesis, she describes how gastroparesis entered her life and how she managed to accomplish her goals while dealing with symptom management on a daily basis. "From doctors who told me it was all in my head to doctors who took the chance and gave me a new lease on life." ​​After the Diagnosis: Transcending Chronic Illness by Julian Seifter and Betsy SeifterDr. Julian Seifter was awakened to life with chronic illness when he discovered that he had diabetes. His life changed in many ways as he began seeing and experiencing the patient experience. In this book he "teaches you how to contend not only with the physical problems, the social stigma, and the emotional fallout of illness, but also with the medical establishment. Convinced that a deeper understanding of the spiritual, emotional, and physical challenges will bring not only comfort and support but also better care, he emphasizes truths rarely acknowledged in medical writing."

Eight Days by Scott ThompsonThis book is not about illness itself, but I found it to be spiritually comforting as you journey with the character through thinking back over his life, prior to death. "Life's short when compared to enternity, but eternity is only worth it because of life."

​Miracles from Heaven by Christy BeamThis book, also made into a movie, was a true account written about Christy's and her daughter's experience with Chronic Intestinal Pseudo Obstruction and a form of gastroparesis. She describes not only the physical impact that illness had on her daughter, but also the emotional toll that it had on her and family, the dismissive attitudes from medical staff. The mission and advocating she had to do for her child as a result. But all is not bad, when faith is involved and certain people enter your life.

If you have a book that you have found to be effective with coping and/or understanding life with chronic illness, please post in the comments below. I'm always looking for new thoughtful and helpful books to read.

​Video from my friend Melissa VanHouten, urging the medical community and public to listen, hear, and support the GP communities need for awareness, care, and better treatment options. ​It can be shared from the Youtube link.

]]>Wed, 18 Jul 2018 04:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/rainbows-in-the-storm"I know my storms are not over, but I also know that my God is faithful. With every storm, there will be a rainbow. What an awesome God we serve! Just when we think we have had all we can stand, the clouds break and the sun shines through. It's as if God is sending us a hug, to encourage, strengthen, and bless us on our journey." (30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans )

How fitting this quote is! As I was riding down the road, with my kids in the back and my dad driving, I came across these words in the book I was reading. I stopped and reread the quote to myself, taking it all in, before I shared what I had read out loud.

God is Great! God has so much Love and Grace for each of us, every single day! Life is not perfect for any of us, some roads are trickier and bumpier than others, but we all have obstacles that we will face. I feel like I've been through the ringer physically, emotionally I have been pained, and mentally I have been exhausted. But through all of this, no matter how it feels at the moment, deep down I know that I am not alone! God is with me every single step along the way. I may overly doubt myself and mistrust others, but God is loyal, loving, dependable, and constant.

The devil tries his damnest to bring me down, to help me cast negative judgements against myself, and attempts to make me feel like I'm running solo down a path of pain, sickness, and heartache.

But GOD is UNSTOPPABLE. HE pulls me through time and time again.

The past couple of weeks my fear about an upcoming trip was becoming louder and louder, almost causing me to freeze and cancel. I wasn't expecting to feel "well" for the trip, but became fearful that it was going to be too much on my body. My husband tried to warn me, make me rethink my decision. But I held steadfast. I put my Faith and Trust in God that the trip would be not only memorable, but positively treasured. Physically, I was expecting to have my normal symptoms and illness related restrictions and challenges, but mentally and emotionally, I needed and wanted this trip.

You see, this was the first vacation that I would be partially sharing with my children, my dad, my brother, his wife, and my adorable little nephews. I, personally, have never been on vacation with my nephews, who are 4 and 6. The weather was perfect with nice breezes and little/no humidity. My family was so accepting and mindful of my personal needs. Early on we saw how easily my body would give out on me as we walked from the parking lot to the museum. But my family didn't let it bother them at all, which kept me feeling comfortable and at ease. My afternoon and evenings were spent at the hotel running fluids and relaxing, while they did other things together - such as swimming or walking around the town. My dad and son even went on a ghost walk together. My kids stayed up late with me to make sure I didn't fall asleep while running my IV fluids since my PICC line wasn't cooperating at all! When I was out with them, I was in a wheelchair/scooter, kept in the shade, or sitting in the AC of the car while they explored some of the sites we stopped at. No pressure, no judgements, and no expectations were placed on my body or me. I was truly able to enjoy and live in the moment, carefree of what anyone other than my family and me thought.

We had fun! My nephew took charge of pushing me in the wheelchair as he enjoyed it so much! Must admit, he made the ride very interesting. The sickness I experienced was typical, the recovery period a little more than expected, but the experience of this vacation was oh so worthwhile! We all enjoyed the vacation and the memories from it will most definitely remain for a lifetime!

I believe that God knew I was in desperate need of some encouragement and motivation, so HE ensured that a comforting "rainbow" was sent to me during the "storm" in the form of a wonderful vacation. My body may take time to refresh, but, emotionally my heart and mind was rewarded.

]]>Tue, 26 Jun 2018 04:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/grieving-pre-illness-identityHow do you say goodbye to the person you no longer are?How do you grieve, find some level of acceptance, and move forward with the person that you have now become, since chronic illness made a presence in your life?

I think it's reasonable to understand that chronic illness can and does negatively impact our lives in various ways. It causes, or at least it does me, to question who I am and what role I now have in society. When one unexpectedly becomes chronically ill, there is so much more to handle than just our condition(s). Often we, the patients, are using all of our available energy attempting to treat, or in many cases, tolerate, our symptoms as well as possible. Daily, we face limitations, some of which are visible, and others which are hidden. When chronic illness resides within us, more than just our physical life are tampered with, and unfortunately, in some situations, destroyed.

The reality is that many people that live with chronic illnesses are.......

Forced to change or quit their jobs

Facing financial hardships:

​increased medical expenses, less income due to medical leave/sick days

Forced to become dependent on others

Loss of support (Friends, family members, colleagues sometimes leave the troubled)

Inability to engage in activities once enjoyed with family and friends

Unpredictability of our health condition ​

All of which dramatically alter and impact not only our's, but also our loved ones' lifestyles.

These undesirable changes can create a LOT of confusion and uncertainty. Our identities, the ones that were familiar, the ones we created, and often the ones we defined ourselves by, suddenly disappear. Our new reality is scarier, stranger, unknown and flooded with uncertainties. Not only are we left suffering and trying to figure out how to best live with our new health conditions, but we are sometimes left emotionally suffering as we try to figure out our new "normal".

Waking up one day to a strange body and eventually staring at a stranger in the mirror, one that you no longer recognize, can be agonizing. It's mentally exhausting and disheartening, especially when you can't seem to let go of your former self.

How do you decipher your true identity, the one that is suppose to represent us for our entire life? Ideally, I think you would reflect up your talents, knowledge, skills, personality, and ultimately your "being". But what happens when you just see an empty blank slate? When the talents and skills that you once saw in yourself have become obsolete?

When all of your most current knowledge seems to dwell on your medical experiences and personal research. Your personality bounces around from one extreme to the next as you try to protect yourself or the ones you love from the horrible symptoms, loneliness, and at times negative thoughts that poison your spirit day after day. Avoidance and distractions become the norm. Withdrawing yourself, so there is no one left to disappoint or feel disappointed by. For me personally, I catch myself trying to withdraw from everyone except my kids.

I believe that it's important for us to recognize our tendancy to withdraw or isolate ourselves. Let's be honest, living with chronic illness is already isolating us enough. We don't need to isolate ourselves any further. We need positive personal connections to maintain our "humanness".

Sounds easy, right?

Hell, I wish that was the case. You see, when dealing with feeling physically awful day after day, facing nearly constant symptoms, missing out on special experiences and opportunities, letting others down with failed plans, and also dealing with negative consequences on account of your actions on a regular basis - your mind begins to be compromised as well. When you lose yourself, lose your identity, and no longer know who you are or what you have to offer, it becomes difficult, seemingly impossible, to communicate, share, encourage, support, or even genuinely connect with others.

​It's like the way you view yourself slowly begins to erode away. Everything you used to think about yourself is now challenged by your new limitations, placed on you by your own body. Reconsidering who you are deep down inside and having trouble defining yourself to the world can make it even harder to accept the realities of living with chronic illness. You start to feel angry, hopeless, helpless, resentful, damaged and yes, even depressed. Coping can become overwhelming and your new identity just isn’t as helpful or desirable as your old one, or at least that's been what it appears and feels like for me recently.

Deep down I know that I am someone. I know that I try to help others when I can. I know that I'm kind and compassionate. I know that I'm a caring and loving parent. I just can't figure out how to redefine or reconnect with myself. I have been sick for over 5 years now. I was sick for a few years before I started losing my identity and self. I was able to hold on to my identity when I believed that I was going to be healed. My mentality or anxiety did NOT cause my illness. But, I can admit that the past couple of years have been a course of ups and downs as I struggle to live with the stress that chronic illness has placed on my daily life.

However, I refuse to cave. I am determined to reclaim and identify with a newer version of my identity. One that is respectable, acceptable, and manageable for me. So let the quest continue...

-------If chronic illness has led you down a path of an identity crisis, I would love to hear your story.How did you redefine or reclaim your identity? Feel free to comment below or private message me via the contact form. ]]>Wed, 16 May 2018 04:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/shattered-dreams

My life was shattered when I became ill. Not only has constantly being sick since Feb 2013 impacted my daily health, how I feel, or how I function daily with my family, it also negatively impacted my life when it took away my ability to be in the classroom with my students. My GI disorders have shattered my nutritional intake, my patience, my strength, my optimism, my ability to actively participate in life with my kids, my purposeful living, and my meaningful career. It has shattered many aspects of who I am and who I desire to be.

I never looked at teaching as just a job, career, or paycheck. I knew before entering the profession, that I would not make a great living financially, that I would be underpaid, that I would be spending some of my personal money for classroom materials (didn't realize how much) - but the paycheck was never my motivating factor. TEACHING was. I chose a career in teaching because I truly enjoyed it. Teaching was my dream, passion, mission, and purpose. I was able to completely give my all, because I loved being an educator. As much as I hate being in front of others, talking in front of or even to adults, and being put on the spot, I was always in my comfort zone when teaching my students.

​The bonds, relationships, lessons learned and taught, laughs, discussions, improvements, student potential, and possible differences made while teaching were more than worth the amount of “work” I put in during the day and brought home at night and on weekends. The testing, I do not miss at all, the paperwork was awful (and argumentatively pointless) at times. The money provided to schools, classrooms, and teachers was a joke, but the actual teaching and student growth witnessed was captivating and extremely worthwhile to me. Were there challenges? Absolutely. Days I wanted to repeat, retry, or skip altogether? Yes. Changes that would have made the educational system better? Sure! Students that I possibly didn't reach as much as I hoped? Yes. I'm far from perfect. But, never would I have ever imagined that my teaching career would all crumble before me and end before I was ready to stop teaching. All because I became unexpectedly and chronically sick!!

I can admit that the last 3 years I was actually in the classroom were very difficult due to my health, numerous doctor visits, and constantly feeling ill. I was trying to just get by to make it home and quite literally collapse in pain and fatigue. At the same time, I was lacking the nutrition and energy my body required to actually teach. I was spending too much time creating and writing substitute plans, which unfortunately meant more review or “book/worksheet” based learning from my students, rather than my own preference of lesson plans that I would have taught. My students were missing out on the hands-on activities, projects, and learning experiences as well as not being challenged or going as in-depth that we would have if I was able to be there. I spent many a days too nauseated to make it through a lesson or too lightheaded to move around the room. Days were spent with tears flooding in my eyes as I tried to catch a breath or moment of rest as they rushed through their lunch, while also attempting to prevent my students, colleagues, administration, and parents from seeing the intense pain or sickness that I was dealing with on a daily basis. Days were spent struggling to maintain my composure until a substitute could be found and able to come in to relieve/replace me for the day. Plans were adapted and changed at the last minute, for students and me, as unexpected sick calls mounted in the mornings due to extreme symptoms or impromptu feeding tube problems requiring medical attention.

I put so much effort, love, time, and heart into truly getting to know each of my students, discovering ways to connect and reach them to my best ability, while also trying my best to be an inspirational teacher. I felt a sense of pride and fulfillment until this damn illness took over my body and required too much of my energy and time. I was not mentally ready to give up on or pause my dream of teaching. I was not mentally ready to say goodbye or leave it all behind. My world was shattered. My dreams were shattered. My identity and purpose were shattered. And to be honest, in many ways they are still shattered today.

Physically, however, I know that I had no choice. I was too sick to be reliable, dependable, or physically stable in the classroom. I tried to be patient with my body. I tried teaching with the pain, nausea, fatigue, and sickness. I attempted tube feeding while teaching. But it just wasn’t enough to succeed or meet my basic expectations for me as a teacher. My students were not getting the education that they deserved, when my schedule and health were so unpredictable and negatively impacted. My body literally could not keep up.

I was limited in ways I didn’t realize was possible. I lost the energy to search and discover meaningful ways to make the lessons intriguing, enlightening, exciting, challenging, and memorable for my students. I began having difficulty meeting my expectations and goals for the class, which was unfair to my students. My health required too much of my attention, medical leave and sick days were exhausted, and I was forced physically by my health and literally by my county to resign and go on long-term disability until my health stabilized or improved to a level where I could once again function to meet and exceed the needs of my students. My teaching was no longer significant enough to overcome the obstacles created by my health needs. I was no longer enough to make a lasting difference in my classroom. Instead of motivating and influencing my students, I unintentionally was holding them back from reaching their utmost potential during the school year. I was no longer able to meet their individual or classroom needs without destroying my body in the process. The daily transitions and routines became a struggle, full of uncertainty, and choppy for me and most likely the students as well. My body was failing me, and as a result, my career and passion were being stolen right out from under me.

Now, I feel lost and empty. There’s a void that I don’t know how to refill. I fought hard to meet expectations during my childhood and educational years as I prepared myself to set out and conquer my goal of teaching. I followed the plan I set, I stayed focused, and I was on the path to achieving my dream of becoming the teacher that I had envisioned for so many years. I was on a successful and meaningful road, making my family and self proud. Living with a career that I strongly believe God had intended for me to live. Helping students see and believe in their individual and unique potentials, regardless of backgrounds or lives outside of the classroom. Incorporating compassion, trust, and a shared respect and love of learning. I had an opportunity to truly make a lasting difference by encouraging my students to visualize how education, dedication, and personal strengths could help pave a future full of possibilities and opportunities to achieve their own goals and dreams. I attempted to help them discover their identity not only as students, but also as leaders and collaborators, in and out of the classroom. I tried to help them see their value as citizens, to inspire them to communicate and work together with anyone and everyone, and guide them to respect and help others, regardless of their circumstances. Teaching was simply ME. It was MY LIFE outside of PARENTING. My DREAM. My PASSION.

Now all of that has disappeared! At one time, I was hopeful that it would return, but as time passes the reality of my shattered dreams become clearer and seemingly more unreasonable. I miss teaching so much. It’s honestly heartbreaking to think about. I had all of it in my grasp until I became ill. Now there’s no meaning or purpose outside of parenting. At times, I can accept that since I love my kids and treasure the time I have with them more than anything. MY KIDS ARE MY LIFE! THEY are what is most important to and cherished by me. It’s just that it feels as if a part of me, a part of my purpose in life, my identity has been taken and is now missing.

I’ve tried to discover a new purpose to strive for alongside my love and need for parenting. I’ve tried participating in online support groups, helping others live and cope with their chronic illnesses. I try advocating via social media about functional GI disorders such as, but not limited to, gastroparesis and colonic inertia. I’ve tried educating and advocating online about life with chronic illness, feeding tubes, ileostomies, etc. I have tried writing and blogging about my own personal health experiences and allow them to be shared publicly on the internet and in my friend's book. Sometimes, these attempts help me feel useful, but often I am missing the feelings of fulfillment and the intrinsic gratification. They often become repetitive and lack in the joy or feeling of personal achievement that I’m searching for. There is no doubt that I will continue to utilize social media to help others; It's just I'm trying to discover something more satisfying and meaningful to do as well. (Though, I'm not sure I will be successful in doing so.)

Recently, I submitted the required documentation and evidence of professional development needed from the past 5 years in hopes of having my current teacher license renewed. My current license is valid until July. I have no intention of returning to the classroom at this moment in time, as I’m keenly aware that my body is not capable. Honestly, I’m unsure if I will ever be able to return to the classroom full time, though I still strive to hold out hope. However, in the meantime, I couldn’t face losing my teaching license as it would mentally and emotionally hurt me too much. It would be a sign of giving up to me, and would mean that I was a failure in regards to my lifelong dream and focus. Therefore, I’m fighting to at least keep a small part of my identity alive within myself, while hopefully protecting me from too much disappointment.

Even though some of my dreams have been shattered, I still have so much to be thankful for. My life is not over. Therefore, I must find a way to accept my life even with the shattered pieces. Similar to dot art, up close each dot is just that a dot, just like each act in our life is simply an act. Often when looking at all the dots up close they may represent a mess of random dots with no resemblance of anything. However, when you take a step back, all the dots come together to create a beautiful work of art, sometimes even a masterpiece. Currently, all I see is a collection of random dots with no definitive image. One day, I hope to see them all come together to create something meaningful that will make God and my family proud.

]]>Tue, 01 May 2018 04:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/fine-but-not-fineLook at the outer me, really look! Do I look fine, to you?In some ways I am fine,but not fine as well.

Moving around the house,tube feeds for nutrition,IV hydration, Couple sips or spoonfuls here or there.So yes I may be fine,​But not fine as well.

Do you see what's beneath the cover,what's in my soul,the scars upon my body,physically and deep within?Yes, I may be fine,But not fine as well.

Have you experienced my pain, my nausea, or constant fatigue?​Silently trying to avoid outsidersfrom seeing my inner struggles.Yes, I may appear fine,But not fine as well.

Have you ever given up, not wanting to bother talking to a doctor?Already knowing there's no relief to be found,no new way to describe or explain.Yes, I may act fine,But, I'm not fine as well.

So when you see mesmiling, laughing, joking, lovingKnow that I'm alsocrying, struggling, pretending, trying.As sometimes I may be fine,​But, also not fine as well.

Near black outs from the pain and dehydration. Burning hot heating pad continuously against my abdominal and lower left back's skin, leaving marks behind while attempting to dull the inner torturous and horrendous pain.Hot baths, as hot as my skin can handle, to try and soothe my aching muscles from this hidden monster within.

Standing and walking are nearly impossible as a result of the strain of pain. Massaging and squeezing the abdominal muscles with my tired worn hands to try and assist find some type of relief, even if only minimal. The conniving monster stretching, punching, slicing my insides, tormenting, shredding and butchering me from within. Literally, that is the best way I know how to describe this sickening, relentless, and persistent clawing pain. My body, stomach, and small intestines revolting, trying to send everything back up with intense waves of nausea and heaving. Assessing and questioning my resiliency throughout the day and night.

Where is this particular monster coming from? Why did it choose to reside here, within me, at this time? Is it trying to make a permanent residence, even if immensely unwelcome, or stopping by for an appalling villainous visit? Each day become more and more ghastly, loathsome, and frustrating. I swear that it can't leave soon enough! I can't help but wonder what I did to cause it's arrival or what I can do to kick it out?

I attentively and cautiously watch my body's reactions. Are there signs or signals that my body is emitting? Is there an SOS needed for emergency relief?

My ileostomy bag, which seemed to stop or cease for a few hours earlier, suddenly began emptying like crazy. Releasing lots of water and gastric juices in large volumes frequently, which is abnormal to me for sure. The good news is that I know this at least provides proof that there is not a complete obstruction.

Is it possible that I have a partial obstruction (blockage) in my small intestine or near my ileostomy? I guess there's a chance. If so, I can predict that the monster this will likely be a thief of fluids, but I have a chance to survive on my own. Praying that my body will not go down without fighting, I depend and rely on it to find the means to flood my intestines out. I know that the monster will not give up quickly. It will clasp to the walls, acting as a dam, or maybe even a demon, until eventually one of us finally concedes or surrenders.

Realizing the impact of losing essential fluids so quickly, I help supply my veins with my IV hydration fluids. Tempting my fate, trying to deal with this situation on my own instead of reaching out for possibly pointless or unnecessary help. A recurrent question that always leaves me pondering, makes me vulnerable, and often causes me to rebel against my family's well-intended opinions. My ileostomy stoma, surrounded by a tender ring of pain in all directions, with deep muscle spasms, intense cramping, and stalling pain underneath, do not give me hope of relief anytime soon. How long can this monster keep surviving within me? To what will it give? How can I destroy the destruction that it leaves in it's path?

I choose not to throw my white flag this time, choose not to call in for reinforcements, because in my mind, what would be the purpose? What could or would they actually be able to do that would end my misery any sooner?

I am aware that pain medicines are not an reliable option, at least not ones that can truly mask or end this pain. Why? I know that they can literally make matters even worse or keep the monster lingering around even longer, as they will only slow my digestive system down further. That is definitely not my desire or plan.

Fluids, thank goodness for IV fluids, I can run them at home, keeping myself hydrated, which is essential. If it weren't for them - I know that there would be no other choice but to make the dreaded emergency room or doctor visit.

My chair, my heating pad, my terms, are greatly preferred to keep me as comfortable as being completely miserable from this severe striking pain can be. I will not risk letting a doctor or nurse minimize or dismiss this hellish pain. I'd rather take my chances alone until I meet my breaking point and feel as if I have nothing, no reserves left to lose or give.

This action is not wise, and I definitely do NOT recommend or advise others to follow my path; But for me personally, it's the only path that I could accept for myself at the time.

(This was written after seven days of continuous pain. I'm still not feeling "good" by any standards, am still experiencing quite a lot more than my normal level of pain, and keeping my heating pad attached to me, but thankfully small improvements have finally begun to make an appearance. Hopefully, this monster is completely evicted soon!)]]>Thu, 26 Apr 2018 04:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/mystery-evening

Mystery Evening, hazy and blank.Hour or more simply forgotten.Apparently watched TV and conversed with kids,while snacking on Italian Ice, they thought I was alert.

When all of a sudden, my words and actions were slurred. They couldn't understand a thing I was saying,and noticed when standing that I was weak and unstable.

Kids told me the following morning that they had been worried,especially when they witnessed me weak, confused, and jittery.My daughters had called my son in to help, scared that I'd fall since I wouldn't stay in chair as instructed.

The following morningI tried to reflect on the night prior,How could I be present and semi-normal with my kids,while having no recollection of the evening at all?

I feel like a failure, even if it's not trueIt's just I only want the very best for you.You are my life, the reason I am here;Me not being enough, is my greatest fear.

You only deserve the absolute best.Yet are left with me, a complex mess.Loving you full-heartedly in leaps and bounds,But having nothing left to make you proud.

I give you my heart, I give you my all.I promise to do so until the day I'm called.My greatest accomplishments and blessings during my life,Are each of you calling me MOM, which is greater than any strife.

]]>Sun, 15 Apr 2018 18:12:52 GMThttp://gastroparesiscrusader.weebly.com/blog/chronic-illness-in-auto-termsAs my body's driver, I am more familiar with my body than anyone else. I know how it feels when functioning, what my comfort levels are or are not, and understand exactly how smooth or rough the ride can be. I, along with God, determine what's most important in my life, the purposes that I strive for, and the expectations I have regarding my functionality. How I feel and the quality of my journey, may often be more important and essential, than how I actually look or what the “blue book” value an outsider may perceive that I am actually worth.

My mechanics, or doctors if you will, help me manage and develop possibilities that may help improve how I function. Just like vehicles, I have many different systems that have to work together to be effective. I have various areas to take in consideration, some requiring more attention at time than others. Sometimes the adjustments we make may help, sometimes they will be trial and error, at times the changes may even create new additional problems, but all in all we slowly continue to make small calibrations in hopes of improving my overall condition physically and internally.

In the automotive world, different fuels work better for different vehicles and burn the fuel at different rates. So doesn't it make sense that different people work better with different types of nutrition and hydration and similarly different people burn their fuel at different rates as well.

Comparable to automobiles...

If one places too much physical energy, or battery power, in controlling, maintaining, and meeting everyone else's expectations, they might drain themselves to the point where nothing is left for them to thrive on. In this case, the sole purpose of their life, the heart of the engine, which is to ride through the wind and travel along life's journey, may not be successfully accomplished. Too much energy spent on attempting to meet only medical expectations, without respecting the mental and emotional needs as well, can unfortunately come at the cost of leaving no energy available to enjoy an acceptable quality of life. Similarly, focusing only on one's emotional well-being and physical activities, whether enjoyable or not, without taking care of the medical needs (mechanics), can also create issues, as the body would not have the capability to perform efficiently.

Like a defective alternator, our mind often produces symptoms that alert us of potential problems before larger problems begin to arise. It's main job, or purpose, is to make sure that the battery, our energy, remains charged so that like a vehicle, we can function appropriately. However, if we do not carefully monitor and control the energy expenditure it can become completely depleted of energy and will not be able to keep up with the amount required to successfully function and meet even basic needs. This is why it's imperative that we do not ignore our warning signals. Eventually, this can lead to the possibility of being left alone and stranded. Additionally, it can also create a domino effect of "electrical" problems that can ultimately cause a complete breakdown.

Batteries, alternators, radios, and other vehicle components, like our bodies, can sometimes fail on their own with no warning or reason. However, there are ways that we can attempt to extend and improve the quantity and quality of our lives.

Personally, I am currently trying to return to feeling somewhat comfortable with tolerating my health, like I was prior to my latest infection. It wasn’t perfect by far! I was still dependent on IV support and tube feeds, running on low energy, and dealing with symptoms daily. But, I was also starting to figure out how to function alongside my limitations, which meant that I could also reserve and discover a little energy to enjoy life with my family. When I felt consequences from choices I made, whether it be activities missed to recharge and refuel myself or trying to do too much physically, resulting in wearing myself down, I could at least say that those moments were worth it and acceptable.

Currently, I am not always feeling like there is a “worth it” label for the struggles I’m having within my health journey. At times I'm missing the human element, losing my idea of self, and am extremely tired and frustrated because it can feel as if I am running on a hamster wheel, getting nowhere, just wearing myself completely out, for what??

I need and want a different view. I don’t want to be stuck in a wheel of hellish symptoms for nothing but worn out frustration. I don’t believe that I can continue to drive my life around and around a "roundabout". Where and how do I choose the right road to lead me in a tolerable direction?​It just seems as if the harder I try, the sooner I lose energy for anything else because all of my energy expenditure is used to keep riding around and around in circles. How do I determine when it's time to take the risk of trying a new road or simply stopping for a break?

I’m okay with taking time to recharge my engine, if it means I get some time to explore, move, and live life with my family as a result. I don’t want to drain every bit of energy, potential, and life away to be left with nothing. After a while the jump starts will not work anymore. Eventually, if I don’t appreciate and listen to MY body, all aspects of it, I will become completely useless and hopeless, forgotten and neglected, possibly even thrown in a local scrap yard. What then?

Unlike with vehicles, it's not as if I can calmly and confidently walk into a store and buy a new battery or alternator. Furthermore, I can not trade in my body for a brand new one. It's MY responsibility to take care of myself and all of my imperfections, the best way possible, with the help of my family and doctors.

]]>Fri, 13 Apr 2018 04:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/bodys-vehicleWhere do I go from here? What do I envision my future to be like?

I can question my medical issues, trivialize, ignore, avoid, or tolerate them,but that isn't all my life is meant to be about.

Life is much more complex than just my symptoms. Will I ever physically return to feeling good on most days? Will I ever be able to nourish my body with the nutrition and hydration that it needs on my own, without requiring the use of medical devices, lines, and pumps?

I don't know, possibly, but also likely not, but shouldn't that be okay?Does it matter how I fuel my body, as long as it gets fueled? Should I have to keep putting myself through torturous and painful attempts,just to try and be more normal in the eyes of others?

It's such a tricky slope.At times, I honestly want to stop everything for a break and to masquerade in normalcy,if even only for a few moments.

Of course, it always seems to catch back up to me. The consequences I face can be harsh, physically and emotionally. BUT, at least during those moments it's from my choice and fault.

Sometimes, I put way too much effort at following doctor orders and trying to be an "ideal" patient, that I end up losing myself. I'm not saying that I shouldn't listen to or consider what my doctors say, but if it doesn't help or it if creates more pain and problems, then I have to figure out how to be REAL and concentrate on LIVING my life the best I can as ME. No one knows how it feels to live inside of my body better than me - so it's my duty to try my best to listen to what my body tells me.

I guess it's kind-of comparable to the automotive world.I mean, for a vehicle to function properly and efficiently,it has to have not only a charged battery, but also an alternator to help keep it running smoothly.

Have you ever payed attention at the various vehicles that surround you throughout each day? Ever considered the story that they tell?

Some appear to be perfect with all the bells and whistles, but have only experienced the same predictable routes day after day to maintain their pristine image. Other cars appearing to be perfect, may actually run like crap, if they even crank up at all, simply because the owner failed to take care of the soul of the car. Instead, too much time, attention, and effort may have been placed on their visual appearance or internal mechanics were avoided or ignored.

On the other hand, there are some vehicles missing bumpers, with dents and dings on the outside. Maybe even spots of rust. The interior may have holes in the seat cushions or cracks in a window. Likely, many of the "extras" that are desirable, but not essential, may not be present, but the vehicle runs like a charm. The purpose of the vehicle is still successfully achieved in the eyes of the driver.

Then of course, there are some vehicles that are somewhere in the middle. They started out like every other vehicle, shiny and new with zero miles of experience. They function well for the most part, but may need more attention or support along the way. Maybe a tune up has been required more often than most, maybe some recalls requiring corrections, tires or other materials possibly replaced, a defective radio or aggravating imperfections ignored, an engine rebuilt, or so on. However, the SOUL of the vehicle is strengthened and treasured for the many memories that it has been a part of and for the positive experiences it has helped provide.

I envision myself as being in the "middle" category. My personal body being like a vehicle that is no where near perfect, requires more adjustments and tune-ups than I'd prefer, but also is full of valuable memories it's helped create along my journeys. Spills on the floor from unexpected mishaps, scratches on the exterior from bumps and accidents along the way, replacement parts for areas that experience malfunctions, and creative alterations to maximize performance. Memories of traveling with and visiting loved ones, special events like graduations, marriages, new babies, and vacations appreciated. A vehicle filled with sounds of singing, crying, laughter, worry, and yes even disagreements, but also the comfort of knowing that whatever the outside looks like, whatever negativity my body has experienced, that I have survived and remained true with all of the memorable history and all of my soul. My body, a vehicle that may not be the most dependable or beautiful one on the road, a vehicle that other's can't comprehend or understand how it functions, (including me at times), but a vehicle that keeps on traveling in search of more positive and memorable adventures with my family. A vehicle that maybe one day will discover the secrets behind how to make it work more effectively and reliably on the inside or, who knows, maybe one day my vehicle will be revitalized, better than ever anticipated.

Therefore, my current focus is not only on my outward appearance, but most importantly, on my overall functionability. Some days will be a bumpier ride than others, some much more daunting, but thankfully there will also be some days that I'm able to cruise along in the wind.

]]>Wed, 28 Mar 2018 15:34:25 GMThttp://gastroparesiscrusader.weebly.com/blog/just-cant-give-upShawn Mendes just released a new song that I can relate to. His heartfelt and emotional song, "In My Blood" is so on point. Our contexts or experiences that lead to the feeling of giving up may be different, but it still pulls at my emotions. Everyone, sometime in their life, has felt like giving up. Whether it be because of anxiety from relationship mishaps, financial distress, personal conflicts, health, or a mixture of all the above, the thought of giving up seems to find a way to creep into our lives one way or another.

I admit there are times that I have felt like giving up. Some more serious than others. Sometimes I've wanted to quit physically, sometimes emotionally, sometimes I have wanted to quit the whole damn situation.

Sometimes, I simply want to give up on my search for improvements. I want to give up trying to explain or figure out a way to feel better. I want to give up playing with trial and error treatments and medications. I want to give up rolling around a damn pole or carrying formula around on my back. I want to give up playing the wait and see game. I want to GIVE UP because of these freaking painful and relentless symptoms that haunt me day after day. I want to give up because I'm frustrated from trying to help my body with needed nutrition, only for it to lead to a flare of sickening and intensifying symptoms.

I feel like giving up because I feel selfish for trying so hard to feel better, when my sole focus should be on my kids. I feel like giving up because I'm tired of pretending to be strong. I feel like giving up because I fail at finding the right words to adequately describe how I feel. Sometimes, I want to give up instead of trying to connect with others.

I want to give up because my health can make me so undependable and unpredictable. I want to give up because it can make me feel useless. I feel like giving up when I am forced to passively watch life's moments pass by. I feel like giving up when I continuously have to battle ridiculous fatigue for attempting to participate in life. I feel like giving up when tears start flowing due to feeling broken, like today. Feeling numb and dazed can make me feel like giving up as well.

Hell, I want to give up for having the idea of wanting to give up. I want to give up because I can't seem to be me, even if I'm not sure who I'm suppose to be anymore. Giving up sounds so easy, but damn, it adds fuel to the next fire!! It makes me ANGRY after I feel like giving up. Angry, ashamed, and disappointed with myself for letting it cross my mind, even if only for a brief moment.

When I speak of giving up, it doesn't necessarily mean I'm giving up on actual life itself. It may be giving up for a particular moment in time and then eventually reverting back to a more optimistic or more productive outlook.

​The key is that I may FEEL like giving up sometimes, but I DON'T GIVE UP. I CAN'T GIVE UP! I have too much to live for, to strive for, and owe it to God and my kids to keep giving my all, regardless what obstacles I face.

Shivering, cold chills tingling through my frigid bones and musclesExhausted and as cold as an icebox in the midst of winter.

Intense desire of crushed ice piercing through my body. Full and bloated, yet cannot calm the raging cries for ice!!

Starving and thirsting for the freezing crunch to be felt between my teeth.Wanting to relieve the burning sensations in my mouth.

Goosebumps running along my arms and legs as I shudder and quiver under my heating blanket.Whether I'm on the recliner or in my bed, the blanket is set to high.At times, even needing the assistance of my heating pad.Sweatpants, sweatshirt, and thick fluffy socks should be enough to keep me warm.My stomach bloated, full, and nauseated but something inside still demands ICE!

Nothing seems to make it calm down.Agreeing to listen to my inner craving calms just a little when I give in to chewing ice. Annoying my family to the max and setting my other symptoms haywire.Literally freezing the interior of my body, risking my teeth, in search of what?

ICE??​Ice from Sonic, Chic-fil-a, Hwy 55, or my favorite Cookout​are preferred due to texture.Crushing ice in a blender at home is a possibility as well. I've also tried frozen Italian Ices from the grocery store and can't leave out an occasional Pelican's shaved ice. I don't want the sugary syrup, don't want any soda or drink, just want lots of extra extra ice.

I attempt to avoid the constant desire for ice.Allowing myself to cave only once or twice a day & limiting the volume.Whatever ice I place before me will eventually be chomped away. Leaving me with even more coldness and stomach discomfort to endure. An endless cycle of madness that I can't seem to alleviate.

A paradox of ......craving and chewing ice when I'm already experiencing cold tingling shivers that I can't warm up.a stomach being crammed and forced to deal with ice, when it's already fighting against any intake.listening to my body's a win-lose situation. Part of me wins while the other is denied & punished.

]]>Wed, 21 Mar 2018 04:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/surviving-lifeSurviving life with chronic illness is definitely not a desirable or easy task. To spend a few hours outside of the house, I’ll escape with a close family member, because they are appreciated, valued, and safe. They are aware of my illnesses and know the normal signs to watch for in case I need assistance or need to go home early, often before I'm ready to admit it.

Getting into the doctor and making it through a visit can feel like a marathon that I haven’t trained for. When diving into my current and most recent symptom lists and treatment plans, it can become exhausting and repetitive. Having an extra pair of listening ears, either one of my parents or my husband, can be extremely helpful and beneficial. Not only can they help express to my health care team what they witness, but they also are able to help me process what was said during the appointment afterwards.

I don't choose to “opt-out” of life. My approach to living life in spite of illness just looks different that what it used to and different than what "normal" people would expect. I don't always understand or comprehend how I am feeling or why I am having certain symptoms, and am aware that it can seem twice as hard for an outsider to comprehend, as well as for the me to accurately explain.

At times I do become quiet and withdrawn, but that's not always a bad thing. Sometimes, I’m being quiet because it is my true self, I'm not a talkative person by nature. I have always been more on the shy and reserved side. Other times, I may be quiet because I’m feeling miserable and don’t know how to, or can’t, verbalize what I’m actually feeling at the moment. It can often be hard for me to explain or answer a simple and common question, such as "How are you?" or “Is everything alright?” It’s just easier to give a simple ok or yes and brush it off than trying to adequately express my thoughts and symptoms. Often when I’m not feeling well, I choose to shrink back into my own world. This can be for different reasons. Sometimes it’s simply the best way to distract myself from the pain I’m feeling. However, I have learned from experience that hiding or withdrawing isn’t always the best practice, but sometimes it's the only coping strategy left to result too, especially when my other coping strategies aren't working effectively. I admit that I often avoid seeking help from other people, instead I try to depend on my faith, my individual strength, and my other coping mechanisms. Other times, I have no choice or run out of options. My continued symptoms, especially if constantly severe, may force me to rely on others and their aid, even though I try to avoid it if at all possible.

I don’t like to let people down and when I get the impression that I do, or from my perspective I think that I have let someone down, I feel terrible, especially if it's been happening often. An occasional let down here or there is tolerable and acceptable, I don't expect to feel decent every day. I'm aware that bad days are destined to occur from time to time, for me quite regular. At times, I do find myself battling the "Fear of Missing Out" mindset, especially in regards to unique experiences with my children. I know that it's just a matter of time before their age and their personal life, is going to interfere, limit, or remove the possibility of having the opportunity again.

Sometimes, I might need to spend time alone to re-energize, but when it’s due to a health flare, it’s not an enjoyable experience. Some of the activities I would normally do when spending time alone — reading, writing, watching tv, listening to music — are downright impossible when I’m feeling my absolute worst. As a result, the solitary hours can seem painful and endless.

I have learned to hang on tight to decent moments and treasured time with family, no matter how simple, as they are what helps me survive the sick times and remain hopeful for tomorrow. I've learned that there is nothing wrong with taking one day at a time. In fact, sometimes I have to focus on just an hour or few minutes at a time, and that's alright.

It’s important for me to have a small circle of people that I can depend on, that I can count on. It can be easy to feel like a mess, maybe even a burden to those around me. It's also not abnormal for me to cope with difficult situations or try to be a protector (of self and/or others) by simply putting up a wall, or pulling up my drawbridge. (Earlier blog about that can be read HERE). Yet, when I truly take a moment to consider the trusted loved ones and caring people that I choose to surround myself by, I soon realize that they don't feel burdened or disappointed, but rather are just concerned and want to help.

In short, surviving and living with chronic illness is not impossible. There are positive moments and blessings along the way and a new appreciation for life that's often taken for granted can be gained.​"Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind." - Bernard M. Baruch]]>Sat, 10 Mar 2018 05:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/date-nightHow do you have a date night,when you live in a small town where everything revolves around food?

Trying to be a "good" wife,by spending a couple of hours with husband away from the house.

Aware that my energy is sparce,that at any moment my symptoms and fatigue may become intolerable.

So what did we choose to do on our night out together?

As a family we went to a restaurant for me to watch them eat;But hey, that wasn't bad because it meant that I didn't have to cook,and it was nice to be out with my family.

Then we dropped the kids off at home,deciding to spend some 1 on 1 time together.I honestly can't remember the last time we went out, just the 2 of us.

But remember, we are in a small town. So we went to the Ale House for him to have a couple beers.It was completely dead and from my standpoint, boring. Beer, hotdog, and pizza aroma to fuel my nausea,but kept opinions to myself, as I honestly wanted him to enjoy a night out.

He finally decided that he would rather go somewhere else.We left after he had 1 lonely beer.Next stop, a local restaurant with bar. This time there was the option of beer and chicken wings.Fun right? (full of sarcasm)

Did I complain? No way.I was proud of myself for actually agreeing to a date night, even if it was to be a spectator.I was happy for my husband to have a chance to spend some time with me away from the house.Just had to deal with boredom and the constant reminder that I am no longer "date worthy".

I wanted him to have a great night,however,he was left snacking and drinking by himself as I simply just sat and watched.The night ended early on account of me, back home and in bed by 8:00.Days of fatigue for me to overcome as a result.What a disappointment and horrible wife I must seem at times!]]>Tue, 06 Mar 2018 15:35:56 GMThttp://gastroparesiscrusader.weebly.com/blog/the-resident-yes-pleaseAs a patient with chronic illness, I have had many experiences with doctors and medical staff in clinics and hospitals, as an outpatient and an inpatient. I have undergone countless diagnostic tests, witnessed doctors that truly cared and wanted to help, as well as met some that were dismissive or unwilling to listen.

My health issues and experiences have made me more knowledgeable with healthcare and health advocacy. I have an interest in learning more about health and patient care via social media, current research, medical articles, and even TV series or movies. Currently, I enjoy watching THE GOOD DOCTOR, MYSTERY DIAGNOSIS, and GREY'S ANATOMY. However, my favorite medical show by far is THE RESIDENT on Fox.

When watching THE RESIDENT, I find myself loving the characters of Conrad, Devon, Mina, and Nic. Why? Simply because they are in medical care for the right reason, to help and protect patients! Unlike other medical staff and beauracrats, they are not driven by greed.

I am well aware that everything in THE RESIDENT is not accurate, that the real world does not function exactly like the show, that lines are grayer, and it's not realistic to expect doctors to take the extreme measures that they do on the show. However, it IS refreshing to see light and attention being brought to some of the negative aspects of our healthcare system. There are a lot of things going right, there are many exceptional doctors and nurses hidden in the often cold money-driven healthcare field, but also many areas and qualities that need improving. We need care and treatments to be with the best interest of the patient in mind.

In regards to this TV series, I have thoroughly enjoyed watching all of THE RESIDENT episodes thus far, some watched more than once. It is a show that I eagerly wait for and actually stay up later than usual to watch. Yes, there are wonderful personalities, actors/actresses, and drama that aides in making the show pleasurable to watch; But the medical storylines and doctor-patient connections are what draw me in the most.

Last night's episode,Season 1 Episode 6, was especially intriguing and compelling for me, as it focused around a patient that I could really relate to.

(Beware: Possible Spoiler Alert)No, I do not have the same illness as him, though I am aware of MALS since some online friends have had it. The emotions that he portrayed, on the other hand, were extremely familiar. I could feel the pain, frustration, malnutrition, and testing fatigue, that having a misunderstood or unfamiliar GI condition can create. The most captivating patient of the night, was a young man that was suffering an injury partially due to malnutrition. He was facing nutritional deficiencies as a result of a chronic digestive problem that made it nearly impossible for him to eat. (Hmmm, ends up being a different condition than mine, but oh so real!!!) Throughout the episode, his goal was to feel better, but he desperately did not want to return to being a test dummy. He had learned from his medical experiences over the past 10 years, that doctors had no idea what was wrong with him or how to treat it. Therefore, he was hopeless about getting answers for his digestive health and nutrition and just wanted to correct the injury, then return to his "normal" life of suffering that he had unfortunately become accustomed to.

YES!!! Finally, a TV show that demonstrates how patients sometimes have doctors - for years - that are unsure how to diagnose or help a patient that is literally starving from malnutrition! Like many other patients I know, his past doctors just left him to figure out how to deal with it on his own! Sadly, this happens ALL THE TIME in the Gastroparesis and Functional GI Disorder communities.

This GI patient was pleading to just be left alone. He no longer wanted to be a pin cushion. He had been one too long already, with no answers or relief. Conrad, the ER resident doctor, was determined to help him without dragging him through a lot of unnecessary tests. Not surprsisingly, all of the "specialty" teams at the hospital swarmed in with a desire to run all kinds of tests, most of which he had already undergone numerous times before. Of course, they wanted their own tests (not another hospital's results) and saw the money that could be raked in - not taking any time to consider what stress and pain, physical and emotional, that additional testing would create for a patient that had accepted, as much as he possibly could anyway, living everyday with malnutrition and digestive pain. Not to mention, the psychological ("all in your head") ideology that's often thrown out there as a possible reason when doctors don't have the answers. Surprise, surprise. Isn't that a common diagnosis when a doctor is unable to figure out or "cure" someone from a chronic misunderstood condition? Especially one that is invisible.

I'm not nieve. I am sure that doctors and/or nurses in the medical field will deny that some, maybe even most, of things in this show occur in real life. I'm sure that many pin point parts of the show that are "ridiculous" in a true hospital setting or possibly even humorous, just like I do when watching movies about teaching. As a patient though, this series speaks volumes. Every single day I witness, hear, and read about patients going through similar situations. In fact, I too have felt like a testing dummy with no answers or effective treatments, just test after test. It becomes frustrating, stressful, and tiresome. At times, I too have felt like completely avoiding ERs (or doctors) for any situation, regardless of how severe my symptoms are, simply because I have lost hope that anything can be done to help me. I am hesitant to even bother with undergoing further aggravating and undesirable testing. I, like many other GI patients, have to depend on trial and error, off label medications, in hopes of better controlling the symptoms with no end in sight. The majority of diagnostic test that chronic GI patients have to endure are not only painful, but often exasperate symptoms and create more discomfort or additional problems, yet provide no new ideas toward treatment. It gets discouraging and old really quickly. Sometimes you just want to be "fixed" and leave, as he did with his injury, regardless of the malnutrition or other GI issues that may be going on at the present moment. Regardless of the outcome.

​As chronic patients fighting an invisible GI illness, our condition is often mocked or ignored. I thought it was great how THE RESIDENT episode demonstrated this by showing the other doctors rambling on, ignoring the patient's opinion or story, arrogant, and more interested in money and countless testing, rather than the actual patient. Doctors that are nowhere to be found when hell breaks loose as a result of the tests' side effects on the patient. (Yep, these type of doctors due sadly exists in the real world.) Don't get me wrong, there are some valuable tests that can and need to be done, but retesting everything gets to be ridiculous and unnecessary. Meanwhile, Conrad took the time to listen and respect what the patient was thinking and experiencing. He was able to take into account the whole picture for this patient, seeing him as a person and not a price tag or business deal. Conrad was authentic and only wanted to help the patient reclaim his life, without the continuous pain and malnutrition.

Conrad is the perfect, IDEAL doctor. He CONNECTS with the patient, RESPECTS his patients' need for QUALITY OF LIFE without pain, shows COMPASSION, LISTENS, and LOOKS OUT for his patients' bests interests. There is no "patient shaming" from him and for once the writers on a medical related show didn't portray the patient with chronic pain as someone searching for pain medication. (Not all chronically ill patients want or use prescription pain medications. Many patients, like me, actually avoid them at all cost, as they are aware of the stigma and realize how they can increase GI problems by slowing down the entire digestive system. Most of the ones that do require pain medications are just looking for some relief of some sort to get through the most painful times. )

So, in reality, are there any doctors that share the same desirable qualities seen in Conrad's character? Absolutely! I've been lucky enough to run across a few of them. Unfortunately, some of them are no longer in charge of my care due to circumstances outside of our control, such as moving. However, if given the opportunity, I would immediate run back and place my care in their hands as fast as possible.

Are all doctors going to be able to solve every diagnosis or find the perfect treatment plan, as Conrad does on THE RESIDENT? Not necessarily. But, as a patient, that CAN be acceptable when you are able to trust your doctor completely and feel confident that he/she is on YOUR team, searching for what's best FOR YOU, and not just interested in the profit.

Can you imagine the comfort and relief it would be as a patient if all doctors thought and reacted as Conrad does? To have doctors that make an effort to talk with you because they really want to HEAR about your health story and the impact it has on your life, in your own words, instead of just what your medical record states.

In addition to Conrad's character, Devon's character (the intern), is also learning the importance of protecting and LISTENING to HIS patients. The action of listening is often neglected, yet is so simple and so meaningful to patients, especially patients dealing with chronic illness and fighting for a sustainable quality of life. Yes, I know that there are time restraints, electronic medical record requirements, and physician burn out issues. There's extra "paperwork" or responsibilities behind the scenes that patients aren't aware of. But, physicians actually taking the time to hear what their patients are saying and personally dealing with can be invaluable! Listening, empathizing, and understanding patients as a way to save lives, what a novel idea! This is just one major improvement that the health care system needs to reform!

Personally, I will never forget the doctors that have been there for me. I likely wouldn't be here today if it weren't for a couple of compassionate doctors that took a moment to hear me, believe me, and respect my personal needs and quality of life. They will always be remembered and appreciated. Unfortunately, I've also had some that were set in there ways, couldn't admit that they didn't know how to help, or even placed blame on me - only to create additional issues, intensify symptoms, or make me have to deal with some issues much longer than necessary.

My ultimate goal is to find more dependable "Conrad" doctors in the health care system and on my personal health team, and less of the "arrogant profit seekers."

​Anyway, I look forward to seeing what else THE RESIDENT has to offer in the upcoming episodes! I wonder what situations and conditions will be presented and portrayed? Who knows, maybe one day they will create an episode including functional GI disorders, such as gastroparesis or colonic inertia. Maybe awareness will be brought to enteral nutrition from feeding tubes, or an episode including patients with ostomies. I don't want or expect to see just the rainbows and sunshines, I want to see real issues with realistic treatments and responses. Will everyone be cured? No. Will it make people witness different medical conditions, procedures, and the positive and negative aspects of medical care? I sure hope so.

]]>Thu, 08 Feb 2018 05:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/will-my-kids-slime-meI wanted my 40th birthday to be not only memorable, but also meaningful. Therefore, I chose to use Facebook as a way to raise money for IFFGD. (International Foundation for Functional GI Disorders)

This fundrasiser was done in honor and memory of those impacted by GI disorders such as gastroparesis, colonic inertia, pelvic floor dysnersia, achalasia, reflux, and more. I promised to let my kids slime with me green goo on Facebook Live if we successfully raised $400 or more. Since the goal was met, my mom and I were slimed. Click here to see the video.

]]>Tue, 23 Jan 2018 05:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/my-expectations-for-healthcareI am worthy, like everyone else is, for effective healthcare. I have had, and continue to have, experiences with a variety of doctors in different locations and specialties with varied ranges of satisfaction. Some have been dismissive and uncaring, some friendly, compassionate and willing to help, and some have exceptionally gone above and beyond to help me discover improvements and regain a better quality of life. Below are a few of my personal thoughts about healthcare. They are not directed at any one specifically, but coming from concerns and fears that I currently have or have had during my health journey.​So how can a healthcare provider demonstrate effective healthcare for me?What are my expectations?

1) Acknowledge and convey that I am not crazy, my symptoms are not in my head, I am not exaggerating, and what I experience is real! Unless you have seen me during the extreme symptomatic times or personally experienced the pain and nausea on a daily basis every time YOU try to eat or drink something by mouth, do NOT judge or patronize me.

2) Treat me as an individual PERSON, not as a textbook example or just a case to deal with. Listen, truly listen, and hear what I am saying. Imagine yourself in my shoes. Respect that I know my body better than anyone else. If you respect me and understand my medical narrative, then I can better trust you and your suggestions. If you don't know how to best explain or understand my issue, please be honest with me. I'd rather know that you're unsure but willing to "think outside of the box", talk to colleagues, or conduct more research to learn alongside me, than be brushed off, ridiculed, or given up on. When you walk out the door, you may be able to put the paperwork aside and not think about it again. Unlike you, I have to deal and LIVE my life, with symptoms, every day. I can't close the door and forget what's ailing me. It's encouraging when I know I have a doctor that is dependable and invested in actually helping me when the time arises, even if they don't have all of the answers all of the time.

3) If labs come back abnormal and need immediate attention, please contact me. Don't make my primary or I jump hurdles or go on a scavenger hunt to find information that was needed as soon as possible. For example: Positive lab cultures for a central line and/or blood infection should be relayed to us immediately, not held on to for a week or more. I shouldn't have to keep asking over and over just to receive a copy of my own culture and lab results, ESPECIALLY if they were positive for an infection.

4) I'm aware of my risks! I do not take my health lightly. So, please value my needs and wants for an improved quality of life. In just this past year, our online support group lost more than 53 lives due to health complications including suicide, malnutrition, sepsis, and organ failure. Too many were dismissed or not listened to when they reached out for help from their personal doctors or were unable to find a doctor willing to take the time to help them because they were considered too complex! Friends that went to the ER for fluids because they were dehydrated, were mocked, judged, and blamed from the doctors and nurses that were suppose to take care of them. Some were even sent away with no help or answers, only to end with confusion, uncertainty, and unfortunately, even devastating outcomes. I realize the negative impact that chronic illness can have on all aspects of one's life, including dangerous risks and complications. So please respect my knowledge and help me understand what is the best possible treatment plan for me when taking EVERYTHING into consideration. I realize how important it is to have a medical team that communicates well. Yes, I may come with some fears or be hesitant at times, but I'm not being uncooperative, instead just being cautious because of similar past experiences that I or my friends have been through. In order for me to gain confidence or comfort in the treatment plan we discuss, I may need to ask questions, share concerns, or simply have time to think about it.

​5) I respect that doctors have their own colleagues that they know and work alongside. I don't mind a doctor asking me or sharing information with me in the case that I may be interested in meeting or working with one of them. I promise that I will always listen to recommendations, along with reasoning, and consider my options, including doing my own research if necessary, before making a decision. In the case that I don't feel like it's the best choice for me at the time, if something changes, I will once again reconsider my options and the recommendation. Just give me the same respect if I share how I already have someone in that profession that I have developed a trusting bond with. One whom works extremely well with me, understands and has witnessed my health scenarios, helped me handle them for numerous years, and is an essential member of my health team. Trust me, finding caring trust-worthy doctors is not easy. Starting over with new doctors that are not familiar with where I've been, what I've experienced, the progress made, or the struggles that I still face with my health day after day for 5 years come February, is stressful and intimidating. I shouldn't have to keep being put on the spot to "prove" what I deal with. I deserve to have a medical team that knows me and understands me, that I feel comfortable with, and that I can have open, honest, and trustworthy communication with.

6) Do I want to roll a pole around all day with IV hydration or carry around my tube feeds all day? NO! They honestly can be a pain in the ASS some days! However, I am aware that they help me. They are keeping me stable, allowing me to function better at home, get out of the house for a few minutes with family on some days, and keep me from wobbling around in dizzy weak lightheaded spells. More than many may realize, I'd love to be able to eat or drink an adequate amount to meet my nutritional and hydrational needs. I'd love to be "normal" or even semi-normal again. But my body isn't there and likely never will be. I'm not dealing with a simple stomach bug! Saying that we're going to get more fluids in and remove the central line sounds easy enough in theory and looks great on paper. I understand that you are concerned. Even though it may not be true, when dealing with the consequences of minor attempts causing so much distress, it SOUNDS like I'm being told that I'm going to be stranded, left in a dehydrated state, and have to return to ER visits on a regular basis for fluid intervention. It SOUNDS like, I'm not being believed, that I don't know my body, that it's ok if I'm stuck at home lying on the couch like a lifeless log. It SOUNDS like my concerns and fears are not being heard. Will I try to follow my doctors' ideas and suggestions? Absolutely. I will continue to keep pushing limits and dealing with the painful nauseating consequences again and again, even if I'm already trying. Nonetheless, it is terrifying to consider that my fluids may be taken away and I'll have to return to the hell I faced prior to receiving them and when I attempted ceasing them during treatment with my prior GI. Yes, I get it, the medications are different and still being adjusted. Maybe, something will improve. We won't know unless we keep trying. I admit all of that may be true; The new medications may eventually help me improve my nutritional input with less severity in symptoms. What appears to be missing is that I DO TRY ALL THE TIME, which I vow to continue doing, and I STILL STRUGGLE with symptoms. The thought of being stranded and dehydrated or being forced to hesitate on a regular basis if the ER is necessary is terrifying. I hear you when you say that we will do it gradually, and appreciate that. Slowly decreasing fluids will be more helpful than a drastic halt. But, please hear me when I say that almost feels like a self-punishment, even when I AM keenly aware that it is being done with the best intentions and in an attempt to decrease my chance of a life-threatening infection.

​7) Remember, I am me! My body works based on my health, my organs, my muscles, etc. I live with my body 24/7 while you may only see me for about 30-45 minutes every 3-4 months. There is no need to compare me to other people, especially ones with other illnesses. It is not reassuring. They are not me and I am not them. We are all individuals. The way my body reacts to treatment plans may not be as effective as it is for others. Similarly, certain treatments may work better or help me more than they help someone else. I've learned that treating my illness takes a lot of trial and error attempts and I can't help but become leery of changing something that is notably helping me. Saying that, a doctor can help me understand their point of view and/or reasoning by taking the time to explain exactly how the newest treatment plan(s) we discuss will be more reasonable than the current one for MY health, now and in the future.

8) Realize that ALIVE and LIVING are 2 different things: If it takes feeling unbearably awful to stay home pushing fluids in an uncooperative GI system, without help from IV fluids, just to stay alive, what's the point? If I become more miserable every day, and am literally just here surviving in discomfort, hope is lost, and the desire to be around decreases. If I must take risks to have some relief and energy, so I can actually LIVE with my family, go to the store with them, interact and help them around the house, attend church on some Sundays, etc.. is it not worth it? IV hydration has definitely helped me become more balanced. Being hydrated gives me a reason to keep striving forward with some hope that tomorrow or the next day may be a decent day to enjoy with my family, while also providing me time and limited energy, but energy nonetheless, to create family memories that help me face the consequences after or during the awful symptomatic times. At times I may choose to place emphasis on Quality of Life over Quantity of Life or vice versa. To be quite frank, if Quality of Life diminishes to levels that are hard to recognize or accept, that's when people are more likely to give up on life itself. That's when health seems to take a nose dive, hope disappears, and suicidal thoughts or worse become more pronounced. This is what I want to AVOID at all costs! However, I also don't want to take unnecessary risks for things that may be avoidable, such as infections or blood clots. It's a difficult line to draw in either direction. So PLEASE be PATIENT with me when situations like this occur, whether it's regarding IV fluids, tube feeds, new medications, side effects from medications, surgical interventions, etc. I am not being difficult! I may just need some time to adjust to the idea or figure out my personal comfort level.

9) While I need and want my health providers, regardless of specialty or level, to be comforting and encouraging while providing me with effective medical care, I don't want to be plagued with false hope. My hope has been crushed too many times and I now feel compelled to try and remain neutral. I try not to let my hope build too much, as I don't want to set my family or myself up for more disappointments or failures. I need realistic expectations and goals more than overly optimistic hope. I'd much rather be pleasantly surprised with unexpected positive results once in awhile, than repeatedly discouraged or hurt by expected improvements that do not occur and possibly may never be obtained.

10) Being friendly, smiling, and laughing are part of my character, even when I feel awful. These characteristics help me cope with feeling miserable. It is also my way of trying to comfort my family, especially my kids, so they do not worry about me. When you get to know me better, you will likely catch me trying to put on the "brave mask" as a way of protecting myself. I do not intentionally downplay my symptoms, but have been told that I do so quite often. For this hurdle, I apologize. However, if you actually listen to what my family and I describe, watch my body language, and try to relate, you will likely be able to tell the difference between my "coping positivity" and my genuine feelings. Eventually, with time and after trust is gained, I will feel more comfortable and become better able to be authentically vocalize my reality.

In short, effective healthcare is seeing me as an individual PERSON, treating me with respect and empathy, providing me with honest medical care and knowledge of the positives and negatives regarding my health and treatment options, while also developing a relationship built on open communication. Together, my healthcare team and I can determine what the best course of action is for my personal health circumstances. When effective healthcare is provided, a healthier future can be made possible. And isn't that the ultimate goal? ]]>Sun, 07 Jan 2018 05:00:00 GMThttp://gastroparesiscrusader.weebly.com/blog/2-year-ileostomy-anniversaryJanuary 7, 2018Wow!

2 years ago today, I made one of my most challenging and risky health decisions. I had my colon removed and an Ileostomy placed. It almost seems unreal that it has already been that long, as the memory of my struggles with colonic inertia prior to surgery are still very clear. In no way do I miss the hours of squirming around on the bathroom floor in extreme excruciating pain, the myriad of numerous laxatives needed every single day, or the tortuous hell of impactions and fissures.

I know that I still face health obstacles daily, but, can honestly say, that after the recovery period,I have ABSOLUTELY NO REGRETS!

In fact, I credit and genuinely respect my favorite GI for truly listening to my complaints, being concerned about my quality of life, and helping me discover the reasons as well as a solution for at least some of my complex and troubling issues. I also appreciate him for referring me to a wonderful surgeon, whom after listening to my concerns, conducted other tests (defecography and a second anorectal manometry) to determine if a reattachment would be applicable or if an ileostomy would be required. I firmly believe that we made the best choice for my specific situation.I am able to accept our decision (and my ileostomy) because we confirmed my pelvic floor dyssynergia would likely prevent a reattachment from being successful. In addition, my psychologist helped me prepare mentally and emotionally for the surgery and recovery, which was extremely beneficial.

Yea, I'm the first to admit, my body is definitely not ideal. I still deal with GP symptoms of nausea, fatigue, and pain on a daily basis at varying degrees of severity. My body and health are still teaching me all kinds of new knowledge and experiences, many of which would have been nice to have been able to skip.​I still depend on tube feeds and IV hydration to keep me nutritionally stabilized, work with medical doctors to help improve my physical health, team up with my psychologist to maintain my emotional health, and continue to put my trust in GOD to stay positive spiritually.

I can't deny that there are times I get frustrated and irritated with my health. Sometimes, I get upset and feel like I’m becoming a misfit machine, wondering if I'll ever get better. However, when all is said and done, I am so thankful and blessed for the support I have around me and the medical interventions (regardless of how annoying they can be) that keep me here with my family.

Days are not perfect, some far from, but there are still many marvelous moments to cherish! So.........​​ HAPPY 2nd ANNIVERSARY "ILEO" !!!

​I acknowledge and welcome the improvements that you have made in my life.Because of you, the misery of waste removal has been eliminated.Because of you, endless hours spent crying in the bathroom are now spent sitting with family.Because of you, I've reduced the amount of medications entering my body.Most importantly, because of you, I've regained a few enhancements in my quality of life.]]>Tue, 02 Jan 2018 15:44:16 GMThttp://gastroparesiscrusader.weebly.com/blog/adequately-portraying-self-to-doctorI'm curious to know how others that routinely have doctor's appointments best prepare themselves. Personally, I often find myself conflicted with various emotions. It seems like the times I need a doctor's advice the most, need their intervention to survive an unexpected scenario or types for ending a severe "flare", etc.. the scheduled appointment seems to be so far away; Almost like it can't arrive soon enough. However, when it is time for the actual follow-up appointment, I sometimes wonder if it will end up feeling like a waste of time and energy, even if in reality it's not.

I'm sure you know how it goes, similar to car problems. The issue persists until you take it to the mechanic, and then for some reason the problem seems to disappear, at least while it is with the diagnostician, only to reappear soon afterwards. I think our bodies work that way at times as well, at least mine does.

Next week, I have an appointment with my current gastroenterologist. There have been numerous times that a January appointment seemed like a lifetime away. My health has been through quite a bit the past few months. My body has been out of whack, symptoms have been unpredictable and crazy, multiple ER visits have occurred (and believe me, I avoid the ER like it's a plague), and a hospitalization for central line and bloodstream infection (bacteremia) was required. I had to have my PORT removed and currently have a PICC line placed in order to continue my IV hydration at home. Just yesterday, my Home Health nurse had me return to the ER once again, this time for an occlusion in my PICC line. In short, I have had plenty of situations where seeing or talking with my current GI about my condition may have been beneficial.

So what's the problem, right? I mean, now the appointment is just a few days away. I will have an opportunity to talk to her about everything that's been going on and get her insight.

Well, unfortunately, it's not that easy. Some of those issues are behind me now, so what's the point of continuing the conversation regarding them now? There is no "cure" for the continuous symptoms. My doctor did not observe or witness the strife that I was experiencing, has never witnessed one of my challenging times, and words just do not do justice at all. There's no way that I can possibly make her adequately understand what I have been through recently, or in the past 4 years, for that matter.

Realizing this, additional worries can arise, because how can I expect her to help me if I can't effectively convey to her the challenges that I face? During my appointments, I often "appear" stable or okay. In ways, I may be at the moment. The reason being, I hate taking chances at feeling too poorly away from the house. I take it easy days in advance and decrease my symptomatic risks by strictly avoiding drinking or tasting anything, as it may elicit an increase in symptoms. I mean, honestly, who wants to be extremely nauseated, heaving, or in pain at any time, but especially when on the highway or stuck in medical waiting rooms? I know that I don't want to.

The bad part is, being extra careful and avoiding symptoms, as much as I can possibly can control them, limits what my doctor actually sees, which in return can make it harder for her to understand and provide treatment. It can be counterproductive, for sure. However, if I allowed myself to have a more typical day, along with "normal" daily symptoms, I'd feel absolutely miserable and lend myself to vulnerabilities of being misunderstood as well.

So here I am, concerned about how my appointment next week will go. Will I be able to accurately communicate my health needs and concerns this time or will my concerns be misinterpreted? Fact is, unless you live it, there's no way you can completely empathize or comprehend the impact that being sick day after day has on one's quality of life.

​The goal for me is to attempt to explain my chronic symptoms in a way that might help. Maybe we create a plan on what to do about my home hydration: whether to keep the PICC for awhile or try another PORT. Hopefully, this appointment will be productive and worthwhile.]]>Sat, 30 Dec 2017 19:32:30 GMThttp://gastroparesiscrusader.weebly.com/blog/bringing-in-2018

2017 may have not been an "ideal" year, but I honestly have to admit that it wasn't a wasted or horrible year either. Yes, there are things that could have gone better, health that would have been nice to see improved, activities that I wish I could have participated in, etc. However, while there were challenges, (there always will be), I learned a lot about myself. While facing fears and uncertainties, I gained courage and confidence. While in my low trenches, I survived by holding on to faith, depending on supportive family, and listening to advice from trusted medical team members. Along the way, I attempted to help others know that they are not alone with their health conditions.

Realizing the growth, regardless of how minimal, that I did accomplish in 2017, has lead me to no new resolutions in 2018. Instead, this year, I’m going to continue working on living in the moment, cherishing memories & time with kids and loved ones, using the knowledge and experiences from the past to make me more aware moving forward, and appreciate God’s continuous blessings & grace to help guide me along my life journey!

I am realistic and know that more tough days will undoubtedly be ahead, a new year will not remove all the pain, sickness, or fears! There will be days I'll feel awful, symptoms that will feel unbearable, circumstances that will confront my resiliency, and events that will challenge my self-identity and perception.

BUT, I feel comforted knowing that I will also have times of laughter, joy, and pride ahead of me. Enjoyment will be found and witnessed, sometimes in the most unexpected places. These positive moments will make life worth living, worth celebrating, and worth looking forward to and hanging on for.

As a result....this year I'm simply praying that 2018 has more ups than downs, more laughs than tears, & lots of loving memories that will last a lifetime and beyond!